Squamous Cell Vulvar Cancer: Who out there has this cancer?

Next appointment until 6/27/23. Thank you for your response.

@bobette1 I did not have vulvar cancer. I had uterine (endometrioid adenocarcinoma) cancer in 2019 and a reçurrence in 2021. I think and worry about the cancer almost every single day. For awhile I didn’t tell anyone about my worries but once I did I found out that almost everyone who has had cancer worries about lumps, pains, and most any change they notice. I have pelvic aches and aches in the groin area frequently and finally learned that this is due to the hysterectomy and total hip replacement - two surgeries - I had in 2019.

I think it’s wise to message or call your oncologist and ask about the lumps. It’s frightening to find a change or something new, isn’t it? When is your next appointment with your oncologist?

Even though I didn’t have vulvar cancer I did have uterus and recurrence in the vaginal cuff.
It’s so normal to be a worrywart I have been getting pains in my lower abdomen for years now. Although I have been having CT’s I always worried that it didn’t show if there was something. To put my mind at rest I asked for a pet/Ct which I just did and there are no signs of cancer. All I can tell you is to be proactive make sure you get all your tests and if you have any pain or discomfort go to your oncologist and get it checked.
Good luck.

Thank you for your response. I will try and call the Dr in the morning. I feel like such a worrywart. other than those lumps I am feeling good. Back to work at both my jobs. Getting stronger every day.

Hi @bobette1, I moved your post to your original discussion here:
- Squamous Cell Vulvar Cancer: Who out there has this cancer? https://connect.mayoclinic.org/discussion/vulvar-squamous-cell-carcinoma/

I did this so you can easily connect with other women with vulvar cancer like @westnp1 @misstrouble @ljchicago @sillywabbit @jeanadair123 @shanbam @annie7837 @angie0374 @crissyd @stolisnc30 @cjp930 who have joined the discussion.

Bobette, I can imagine that you're scared to feel 2 new areas of concern in your genital (inguinal) lymph nodes. There are many reasons that can cause the lymph nodes to be swollen, like infection or lymphedema from the cancer treatments or something else unrelated to cancer or treatment. It is definitely a reason to contact your cancer care team with your concerns and to find out what needs to be done (if anything).

Can you post a message on a patient portal or contact them in the morning? How are you feeling since completing treatment?

I completed 6 weeks of chemo and radiation in March for Vulvar cancer. I seem to have 2 new "lumps" down there where my lymph nodes are. Is this normal?

@cjp930 I just read a study where stress is greatly reduced (as measured by cortisol levels) in an experiment where some subjects held the hand of their partner in a committed relationship vs. Held the hand of someone they didn’t know vs. No hand holding. Holding hands with the partner in a committed relationship showed the most reduction of cortisol. So….with your husband at your side? There is scientific evidence that this will be helpful. But you both already knew that, right? He won’t be in the room during your radiation treatments but I’m assuming he can be there during the chemo infusions.

Let me know how the treatments are for you, OK?

Yes that's the schedule. The chemo will be a lower dose to help the radiation work. My husband will be by my side during all this & is a super help. I'm hoping for minimal side effects of nausea, radiation burns, and the bowel problems but am sure no one escapes without any. Praying my body is one that can tolerate this. Thank you for the advice...self care SO important.

Hi @naturegirl5
I start 5/4. It’s 5 weeks of radiation 5 days a week and chemo once a week. They follow you for about 2 years. This trial is the next phase of another trial that showed promise. I’ll keep you all posted.

@stolisnc30 That is a good plan. Do you know when you will start and how long the clinical trial will be?